Everyone has diarrhea every now and then, but if you notice it’s happening regularly, tell your doctor, especially if you’re also experiencing abdominal pain, bloody stool, unintended weight loss and fatigue.
It could be inflammatory bowel disease (IBD), an umbrella term for several diseases in which your immune system attacks your digestive tract and causes it to become inflamed. IBD affects about 3 million adults in the U.S., and rates have been climbing.
There’s no cure for IBD, but that doesn’t mean you’ll be stuck in the bathroom forever.
“This doesn’t have to be limiting if you follow up with your doctor regularly,” says UNC Health gastroenterologist Nannaya Jampala, MD. “This is manageable so that it won’t affect your quality of life.”
The key is to talk to your doctor about any symptoms you’re experiencing, so that you can start treatment quickly and prevent serious complications.
Inflammatory Bowel Disease vs. Irritable Bowel Syndrome
When you have chronic diarrhea, it’s important to find the cause so that you can get the right treatment. IBD has some similar symptoms with irritable bowel syndrome (IBS), but IBD is different because it’s caused by the immune system and involves inflammation and potential damage to the affected area. (Unfortunately, it’s possible to have both IBD and IBS; about 30 percent of people with IBD do, Dr. Jampala says.)
Ulcerative colitis is a form of IBD that is only in the colon, while Crohn’s disease can affect any part of the digestive tract between the mouth and the anus. With ulcerative colitis, you’re more likely to experience extreme urgency with diarrhea and see blood in your stool; because Crohn’s can cause inflammation in more areas, you’re more likely to have a variety of symptoms that can include constipation, vitamin deficiencies and mouth sores.
To identify your specific condition, your doctor will need to examine your entire digestive tract. That means using a tiny camera and tool: an upper endoscopy to look at the top half and a colonoscopy to look at the bottom half. Your doctor may take biopsies of inflamed areas from these scopes. You’ll also get blood work and stool samples to look for signs of deficiencies or certain proteins that are markers of inflammation, and you may need a CT or MRI to look more closely.
“We have to hone in on what part of the gastrointestinal tract is affected and see how intensive it is,” Dr. Jampala says. “Once we understand where the disease is located and the physical manifestations, we can create a plan for you.”
Part of that plan will be preventing the specific long-term complications of IBD, which can include colon cancer, stenosis (when your anal canal narrows, causing constipation), fistulas (passageways that form between organs or organs and the skin), perforations (holes or tears in the tract that could let waste enter the rest of your body) and toxic megacolon (a dangerous swelling of the large intestine).
Treatment Options for Crohn’s Disease and Ulcerative Colitis
While your treatment plan will be specific to you, there are typical approaches for people with IBD.
Medication
With IBD, you will need medication to control your body’s immune response in the digestive tract for the rest of your life. That sounds daunting, but medications for IBD have dramatically improved in the last three decades.
“We used to be very limited with what we could do because the main option was chemotherapy medication, which had a host of horrible side effects,” Dr. Jampala says. “Now, we have much better, safer meds that are very effective and treat the disease with fewer side effects.”
Your doctor may recommend a medicine called a biologic that is injected or infused to stop specific proteins from causing inflammation. There are also pills called JAK inhibitors that block inflammation for moderate to severe disease.
If you have ulcerative colitis, your doctor may start with a class of medications called oral 5-aminosalicylates, which come as pills, enemas or suppositories and work to calm inflammation in the colon.
It can take time to find the medication that works best for you, and “there are more medications in the pipeline that we hope to see in the next few years,” Dr. Jampala says.
Lifestyle Changes
Your medication will make the biggest difference, but lifestyle changes can help prevent flare-ups of symptoms.
Talk to your doctor or work with a nutritionist or dietitian experienced with IBD before making drastic changes.
“Some things that used to be recommended aren’t actually evidence-based,” Dr. Jampala says. “There’s no consistent evidence that gluten has to be avoided or that you have to go low-fiber or not eat. You need nutrition to improve healing.”
No diet has been shown to completely prevent all symptoms, Dr. Jampala says, but the Mediterranean diet and the Specific Carbohydrate Diet (a more restrictive form of the Mediterranean diet) have been shown to help.
Other healthy habits will help you prevent flare-ups and recover from them.
“When you’re experiencing a flare-up or waking up in the night for bowel movements, you will have stress and fatigue,” Dr. Jampala says. “Regular exercise decreases the risk of flares and helps when you’re fatigued, even if it’s a short walk. Sleep and stress management are very important. Meditation and mindfulness won’t completely reduce flares, but they also help with IBS.”
If you smoke, talk to your doctor about how to quit. “Smoking is very strongly linked to worse outcomes and a higher rate of resistance to medications,” Dr. Jampala says.
Surgery
If you don’t respond to medications, your doctor may consider surgery, but surgery will not end your need for medical care.
If you have ulcerative colitis and have your entire colon removed, you won’t have ulcerative colitis anymore but you may have issues related to no longer having a colon.
Surgery doesn’t cure Crohn’s disease; you may need surgery to cut out severe areas of inflammation, but new inflammation will develop. Surgery may be needed on an ongoing basis if you’re starting to experience complications such as fistulas or narrowing bowel structures.
Regular Visits with Your Doctor
Even when your IBD is well-controlled, you’ll need to see your doctor regularly. While the current medications for IBD have very few short-term side effects, long-term use does come with a higher risk for infections and a small increased risk for certain skin and blood cancers.
“It’s important to get regular blood work and all age-appropriate screenings and vaccines, like a skin check and flu, COVID-19 and pneumonia vaccines,” Dr. Jampala says.
Your doctor will evaluate whether your medication still controls your symptoms.
“There’s less risk of this with the newer medications, but some people do develop antibody resistance to their medication,” Dr. Jampala says. “That’s why we see you several times a year—to look at biomarkers for new inflammation or to take a direct visual look.”
If you have inflammation in your colon, you’re at higher risk for colon cancer and will need a special screening plan.
Pregnancy is possible with IBD, but talk to your doctor about which medication you’re using. JAK inhibitors and methotrexate (one of the older medications) aren’t considered safe during pregnancy, but others are.
If you’re dealing with unexplained gastrointestinal symptoms, talk to your doctor. If you need a doctor, find one near you.